Limited Time

I left for a few days to attend a wedding last week, during which time, Ms. J took a turn for the worst. She is currently bed-ridden, because each time we move her, she cheyne-stokes and her heart stops. (!)

So...we are now to the point of check-and-change with the Depends, and move her only so her bedsores heal up.

She just asked us to wash her hair, though...so she's still in there, all right.:)

The nurse just came to visit and thinks that we only have days. I guess the Doc may have been right when she said that we had two months, back in February. I sure don't know. I guess Ms. J is holding on for something or to something and isn't ready just yet. Was it for me to come back? For Dad to come home? He'll be back tonight, so we'll see.

Please keep her and the family in your thoughts and prayers.

Required Watching #1

The Fountain

This is my favorite movie, really. Conveniently for my blog, it also deals with some weighty subjects. However, unlike most movies, The Fountain has without a doubt the most intense visual account of death--from the dying person's perspective--that I have ever seen. I couldn't even attempt to do it justice, so go rent it already.

Seriously, though...there's something about this movie. I sincerely feel, from the bottom of my heart, that there is truth within it. Every time I see it, my heart leaps up into my throat and I swear I'm on the verge of having a religious experience. I feel, every time, like I'm witnessing something Real. At first I thought it was just an emotional response to the beauty of it all, but something inside me really believes that death is actually like what is portrayed in this movie.

And it's distressingly beautiful.

It may confuse and confound you because it's very open-ended and nonlinear, but it's worth it. It can be taken many different ways and it may mean something else to you than it did to me...it's very much open to interpretation. Rachel Weiz and Hugh Jackman are at the top of their game, too. Darren Aronofsky (Pi, Requiem For A Dream, The Wrestler) directs...and...does an amazing job.

Also, it does a very good job dealing with how most people deny death and treat it as a disease, something to be cured. My father is very much that way, so its account of that denial hits close to home.

Miss R Featured on BlogTalk Radio via Caregiving.com

Hi all...I did an interview with Denise Brown over at Caregiving.com this afternoon. Go take a listen if you're bored and don't already know my and Ms. J's story.

It went pretty well, even though I was all nervous and sweaty and caffeinated. (I'm much better in writing.) But, I seem coherent, so...great! There was a caller who swore on air, but hey...keeps things interesting.

To find the interview, visit Caregiving.com, head to the right column, and find the BlogTalk Radio player. I'm on the March 14th episode of Table Talk.

There were a few things I didn't get to hit on that I had wanted to, but I will post on that later today. One of them was "hopes and dreams for the future." I hope to get to that one today because I'm pretty excited about it.

Thanks to Denise for making me feel so comfortable and for all her encouraging words!!!

Required Reading #1

I've been meaning to post on this for a while, but haven't because I feel like I need a full, formal article to do the subject justice. However, I will probably never be satisfied with anything I write, so I might as just write something.

Caregiving is hard. Dealing with death and dying is harder. How best to handle these challenges? Personally, I find refuge and solace in reading about other people's experiences. I've been fortunate to come across a few books that have helped me immensely, and I heartily recommend them to you.

I am planning to do some mini-reviews on the books I've found the most helpful, so look for those in posts to come. For now, I'm going to be lazy and provide a list. Also, I'm always on the lookout for new books that might help us on our caregiving journey, so if you know of any, please contact me.

Anyway, here's a list of the few I've had the most luck with thus far:

1. Tuesdays With Morrie: An Old Man, A Young Man, and Life's Greatest Lesson
I'm sure this book has been on every single required reading list ever written. There's a reason. It's amazing.

2. Living Our Dying
Written by Joseph Sharp, a hospital chaplain who was diagnosed with AIDs. This book is almost a how-to manual for dealing with terminal illness, death, and the dying process. It is truly a must-have, but it isn't exactly fun or light. Sharp includes mindfulness exercises that include imagining your own death...in detail. Sounds scary, but it is enlightening beyond words.

3. Heartbreaking Work of Staggering Genius
An unorthodox selection, perhaps...and one I read a long time ago. Stilll, I've been thinking about it so much lately that I think it's worth including.

4. The Pharmacist's Mate
Recommended a few years ago by a friend, I finally got around to reading it not long ago. I am very glad I did. The author writes about her experience with the death of her father...and about her experience with artificial insemination. Life, birth, family, guns...it's all here.

5. Chicken Soup for the Caregiver's Soul
It should be pretty obvious why this is included. I don't care how sappy it sounds. This book is a necessity for every caregiver's library.

Sleepy Time...

Ms. J has started sleeping in the evening, something she has never done. It usually happens after a day of visits and phone calls, which tire her out. It sounded like today was a very mild day, yet still she is sleeping right through the end of Amelia. (Which, by the way, is a movie I recommend.)

I think I should try harder to wake her up, but she doesn't really respond when she gets like this. Unless I am putting her on the toilet, in which case she becomes wide awake and can't even think about sleeping. (A good thing, I think.)

So, let her sleep and relax since she is clearly tired...or wake her up so she will actually sleep tonight and not keep us both up past 2am...

Anyone? Yeah, I don't know either.

I think I will try and get her ready for bed in her chair...the SoniCare toothbrush always wakes her up, for one. That way I can get her ready for bed and also wake her up a little so she'll be tired for her actual bedtime....which, I just realized, it almost IS.

Are You Okay?

The doctor's words are still ringing in my ears. She doesn't have much time left. We need to prepare for her dying comfortably, with dignity, at home. Her body is wearing out. Pneumonia could take her. Her heart might just stop beating. She is tired.

I pushed her wheelchair through the hallway at the clinic, feeling hollow at the idea of planning her funeral...possibly in just a few short months.

We stopped in the waiting area and I saw her reflection in the mirrored wall. She was bundled in several layers of clothes. Mittens. That enormous fur hat. Those big dark glasses, worn to keep out the glare of the snow. Her face was gaunt and pale. Her body was leaning off to the right. She was motioning for something. I couldn't understand what.

To be taken across the room, away from the draft of the door.

"Are you okay?" Friends and family ask. You've invested so much.

No, I am not. I don't think so. But maybe I am. I don't actually know.

How would I know?

I assume that because I am only crying non-stop that I must be at least somewhat okay, since that seems like a reasonable response to the news that a loved one may only have a few months left to live. If I was rolling around on the ground or trying to light myself on fire, I would know that I was definitely NOT okay. Those are not reasonable responses to this news, to this circumstance. However, I still don't feel "okay."

I am sad. Very, very sad. I feel like my heart is breaking. It isn't even that I am unable to say goodbye. I just don't want to. I still want her in my life. I wanted her to be at my wedding, I wanted her to see my children. (Even though she'd have to wait about ten years.)

I know these things aren't realistic. I have been by her side for most of this last year. I know what the reality is. I know she is declining steadily and has been for a long time. I see how tired she is, how hard it is to get a sentence out. I see that each word is formed with maximum effort and how each breath is so shallow...

I see it. But I don't want to say goodbye. Not yet.

I know that I have a religion. I love my religion. I believe in it...but I have no idea what happens when we die and it scares me that I don't know what to tell her. I have clung to the belief over the past few years, that no matter what happens to us, whatever it is, is not bad. I do believe that there is a force in the universe, something that we must return to after we pass. Do we see our dead relatives? I have no idea. I'd like to hope so, since I certainly like the idea. If it doesn't happen that way, I don't think I particularly mind that, either. (Though it does take a little bit of detachment to be okay with that idea.)

Of course, I can't say any of this to her. Even though I hate the movie and everything it stands for, Ricky Gervais' Invention of Lying may be half-right. In the movie, he tells his dying mother that she'll see all those loved ones that passed on before her. It is presented as a lie that he tells her to assuage her fear of death. Perhaps that IS what it is. Maybe it isn't. I really don't know. All I do know is that whatever happens is not bad. It can't be. I've experienced enough myself to know, to really feel, that something happens. We reunite with the force that made us or we get reincarnated in some fashion or we walk around in a bliss of our own making...I have no idea.

Even with these feelings, I am still scared and I don't want her to leave me. I want her to be a part of my life for just even a few years more. See me get married, Gramma...see my children...please...

I know these things may not happen. I just always thought they would. Gram was such a FORCE...such a part of everyone's life. She raised her kids, other people's kids...saw them grow up and then raised those kids' kids, too. Can I have here there for my life events, too?

Maybe I want her there because I know how much she'd like to be there, herself. However, she is...so...tired. She may even be ready to let go. Do I want to ask her to hold on just to make me happy? Death is another part of life, I think...there is something holy there, something I don't understand fully. I can't ask her to stay around because I want her here. She needs to go at her time, when she is ready.

I sigh. None of this makes me feel better. That's not the point.

Am I okay? I have no idea.

Chaplain Coming Today

So, Palliative Care has agreed to send their Chaplain out to visit with Gram today. We'll see how it goes. I don't want her to feel like it's her last rites or something, but I really feel like she needs some spiritual guidance.

I've been toying with the idea of doing devotionals with her, but I find myself almost embarrassed to do so. I don't know why this is. Perhaps because I don't feel like a religious/spiritual authority or leader AT ALL. I fail and flail just as much as the next girl and feel so odd leading any kind of prayer or study. Plus, it's sort of a sensitive subject...how do you approach something as important as religion to someone who is in the last stages of their life. I have no idea. I can feel my face redden as I even think about it.

Maybe I just need to get over myself and DO it. It isn't about me, after all...